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Everything posted by Bat_Sheva_Myllys

  1. Can you please clarify what you meant by "the strep source being in the gut" in "Will pursue tonsilectomy, but continue to have concerns about the strep source being in the gut?" Bat-Sheva
  2. For the past 5 years I have been under the clear impression that PITANDS can and in Sandra's case is caused by Mycoplasma Pneomoniae antibodies. Sent you her history in brief. Sudden appearance with no history at age 15 following known MycopP and Influenza A. Symptoms are Super PANDAS, reactions to antibiotics, Prednison, IVIG, Medrol drip. Have not noticed Mycoplasma Pneomoniae on your list. Several published case reports in Germany, Turkey and France also support MycopP as one of the causes for PITANDS. Bat-Sheva Myllys
  3. IgG is the definitive test. IgM indicates a current infection. As tests are run mostly after the actual infection, if that one is ever noticed and diagnosed correctly, and results usually take about 2 weeks to come back, IgM have little meaning in the case of PITANDS or even IANDS (I find PANDAS the worng name as it relates only to a certain age group and underlying cause, while it is obvious the age group is of no importance and the Strep has never been the only cause) because the assumption is that the entibodies and not the actual bacteria are the element that attacks the Basal Ganglia in the brain causing the neuropsychiatric symptoms. It has long been noted that unknowledgable doctors test for Strep throat as if that were a prerequirement and dismissing cases on the basis of the smear being negative. AS for MycopP IgG, that too takes some time to rise, but then, in a normal case of walking or community pneumonia it should also subside, like mine did, and very much unlike Sandra's levels which are high, and strongly fluctuating within the high spectrum even 5 years after the preliminary infection. This means that the bacteria we initially believed was handled by the standard protocol antibiotics did remain formant suring the good year after the entibiotics short treatment had an effect and was retrigered by the (upper resp. tract) infection a year later. Makes sense tht only IVIG took care of it and that the treatment ebing stopped for no good reason allowed the situation to deteriorate after 4 good months. I have to mention that 5 years ago and during all these years until now we were made to believe that Anti-DNase-B was not available in Finland and only 2 weeks ago she was finally tested for AST (negative) and this week for Anti-DNase-B (no results yet). We now started a new trial at long term Zithromax, with the hope that the 2 past eyars of no treatment will not be a hindering factor in saving her young life. Bat-Sheva
  4. Sandra (to be 20 in a few weeks) got suddenly ill at 15 after Influenza A and Mycoplasma Pneumoniae. Antibodies have been positive, rising ever since and fluctuating strongly in the 4-5 times the positive level. Reacted well to Zeclar and Prednison 60mg clear for one year. Relapse following resp. infection. Same treatment yielded no result. 60mg Prednison with long term tapering no results. reacted well to IVIG in May 2007. 4 clear months. Maintenance schedule not maintaned and an ear infection triggered again. repeated IVIG and 1 pusle of Medrol for 3 days did good but nto continued (strange story). Risperdal had terribel effect. No immunomod. treatment since december 2007 as no specialist in Finland interested. Situation deteriorated albeit intensive cognitive work. Started Zithromax long term 2 days ago. Sent you her MycopP values via private message. The brave GP treating ehr will love to have your support and assistance and so do we. We must save Sandra! Bat-Sheva Myllys, Sandra's mothjer, Finland quote name='Dr. Rosario Trifiletti' date='Jan 13 2010, 04:50 PM' post='51749'] Dear Parents, I have just encountered two cases of acute sneezing tics in which there was acute (markedly elevated IgM) Mycoplasma infection plus possible strep co-infection. Mycoplasma responds to zithromax specifically and not other antibiotics ...as well as IVIG. So I'm certainly considering this in the differential diagnosis of PANDAS-like illnesses. I wonder if there is some sort of interaction between Mycoplasma and Strep at the immunological level .... Have any of your children been tested for this .... Sorry for the short post --- very very busy today Dr. T
  5. Can those whose kids were/hare being treated with Zithromax (Azithromycin) under any of its commercial names write to tell briefly Why was this antibiotics selected What dose was/is being used How long Who prescribed In case your child was tested for Mycoplasma Pneomoniae Can you please tell us who was the Dr suggesting that and if possible add an e-mail address and/or fax & phone numbers for the doctor If the results were positive, do mention them if you feel comfortable with that. This infoirmation will help us a great deal to plan how to proceed with Sandra's treatment. Her condition is currently very bad and going down. If you consider the information personal, write privately to my box or to batsheva.myllys@gmail.com On the other hand, such cumulative information may be important to other cases. Million thanks from the Frozen North This forum is a ray of sunshine! Bat-Sheva
  6. Thought this should be spelled BSH... Oh then MD-BSH is a very serious illness and I am afraid it is somehwt related to obsessive thoughts and compulsive behavior. Bat-Sheva
  7. Thanks Lynn Any e-mail address or fac number for James Leckman at Yale? Bat-Sheva
  8. What is dd? (can anybody come up with a short glossary for the abbreviations commonly used on this forum. Thanks) Back in autumn 2005 Sandra got a normal dose of Zythromax for pneomonia (think it was for a week or so). This was effective and with a 7 or 8 days 60mg PRednison a few weeks later she got totally well for 1 year. The same regimen was tried when the symptoms returned a year later in autumn 2006 but we did not see much effect so it was abandoned and we tried a long term Prednison with tapering. Not much help. Terrible side effects. IVIG did the job, immediate very positive reaction for 4 months, treatment schedule messed up and the whole thing came badly back. We now consider trying Zythromax on a long term and keep it prophylactically, but the 2 GPs who are with me behind the idea have of course no experience with such a case and would like to play safe, so we are looking for reference information. We consider Zythro because of the bacteria in question, presuming now those doses at the time did not fully eradicated the very tricky bug. Reading the forum various messages I realised others here have been on Zythro for long periods I might as well start a new thread regarding long term use of Zythro... It is obvious that her MycopPneo IgG values have been positive ever since the infection back in spring 2005 (we tested for Strep. Until we got to read the Sammy book the test was a throat smear... now when we used AST (the only test available in Finland) it was negative. No idea if the Anti-DNase-B would have shown something we do not know of even if it were available. In any case, her MycoP IgG have been on the rise. Those few test we were let to do provide information about high (so far up to 5 tomes the positive threashold) and fluctuating in the range of 100%. She had 1 time 3 days Medrol drip (should have been on pulse treatment but the neurologist got enough and left the entire thing incomplete and became incommunicado and the GP he ordered to perform it did not have a clue how and if to continue with the Steroids or the IVIG, so this lane to was celarly not fully explored. ) Other than these she had a few occasions of antibiotics prescribed for suspected Sinus infections. We consider that we have certainly not tried the long term antibitocs if one can say the antibiotics lane at all, based on those 2 times, and in fact we have not really tried other lanes they one should have either, but getting them is altogether a far more complicated story. I think we are going to start the Antibiotics very soon (her condition is really bad and she is about to collapse) and if it dos not fully work (after all, she has been ill for so long and Dr K said what he did and maybe he knows what we do not, or not) we still can try many other options, including long term low dose steroids, pusle, bursts, IVIG and even Plasmapheresis, if only we get a Dr in the position to prescribe and perform it... We might have one but that we shall know only in a couple of months because nothing is this system really moves. In fact, we have been more waiting months and months to be given appointments than anything else and it is this dragging for the past 4 years which causes me and my GPs anxiety and anger, and makes Sandrafed up and tired. Bat-Sheva
  9. Sandra has never had any problems, very kind, empathic, outgoing, highly intelligent, socially active, sporty (our Karate Kid), musical, artistic, succesful academically but not obsessed with either studies or anything else. A well balanced kid. and then we heard such things as sudden Tourett's, Sudden late teen Aspberger (a Nobel Prise in medicine should go to the leading child neurologist who invented that one), schyzo, enxiety disorder, bipolar, psychotic, you name it - they invented, while all along we could see that underneath the look-alike symptoms she is totally normal and fed up with these very strong and ever lasting movements and not being able to concentrate, at times feeling reality is escaping or getting stuck, vocalizations, hair pulling, compulsive movements, getting stuck in the bathroom not being able to get up from bed, toilet, car, in fact any place where she would sit down will require a long session of extremely storng and jerky choreatic-athetotic movements. No obsessive thoughts have emerged in the 5 years and I am extremely thankful for her strong and pisitive chracter and spirit, as she refuses to give up or get depressed and is always willing, even when not able to, to help in house chores, try to read a little, try to play her musical instruments, help with the dogs, help anybody who needs. The beginning was (as we later learnt) Influenza A and Pneomonia caused by Mycoplasma Pneomoniae. The Influenza was gone within the normal time of 2 weeks but weakness, the cough persisted for a long time. She was still badly coughing when we were seeing Dr Milo in Israel in July August and Well after that when we got back to Finland and ran the tests and until she took antibiotics for Mycoplasma caused Pneomonia thereafter. That cleared the symptoms almost completely and the short course of Prednison 60mg which she took in October (we wanted to see the separate effect and wanted to make sure we could follow possible side effects of the heavy steroid treatment, and she was anyway already so far better, so we waited for the 1 week Autumn vacation) and she was all clear until the autumn of the following school year. We suppose that it a case of antibodies retriggered by infection but the mechanism is a guess. Only this week I got some extra IgG values that were stored but never reported to us in the local medical communal center... and it is obvious that ever since she had MycopP her IgG has been high and strongly fluctuating within the very positive range at times over 100% chang. Her leucocytes have been elevated as a rule but CRP normal. My intuition, as well as that of Marjaana (the former school GP) is that the MycoP has not been eradicated by the initial antibiotics and neither by the 2nd round, a year later, both were normal short courses. We never tried a longer one as she prescribed medication according to the normal procedure for pneomonia and was also advised to do so by the head of neurology in our area hospital who never bothered to meet Sandra (proven being a total failure both as a doctor and human being and we would not accept having anything to do with her or her clinic. No other options available in the national system and the private ones are the same faces... We tried privately the best name in the country who got first excited about the IVIG option, for the finance of which we had to wage a real war, but gave up once the schedule was messed up during his absence in the 1+ month of the summer vacation and disappeared from the scene.) No idea what else but an underlying, ongoing infection can explain these persistantly high and strongly fluctuating IgG values and the elevated Leucocyte values, but I am not a specialist (unless you count my 5 years adamantly researching the subject a valid basis of knowledge, but then so are all other PANDAS and Tourette's parents I have so gar been in touch with. I would love to find another PITANDS parent, though). Inspired by the Saving Sammy story and treatment solution we intend to go ahead with long term antibiotics for Mycoplasma Pneomoniae, but need information on earlier suhc attempts, whether for PITANDS of other syndromes caused by it. Marjaana and I now managed to get one local acting GP interested in the case (you really do not want me to explain how this local system works and why it is badly malfunctioning) and he too is of the opinion that we have to get somehting done and fast and now provides for lab test referrals and other such. We intend to hold a meeting in less than 2 weeks and I hope to have some valid info for these 2 GPs to decide how we are to proceed. We also managed to get the head of Rehab clinic at the area hospital (the only clinic we managed to get Sandra to) to finally grasped the idea that there is a causing factor which is probably active and not only symptoms and that psychiatry and its medications are not going to solve an immune induced problem, although it may offer some therapy methods to ease symptoms, and we hoe to see an infection specialist next month. The problem is that he too knows nothing about PITANDS and like all the others will have to study the subject while having no time allocated for it. Hope he has the interest and can maintain it and that if we end up needing plasmapheresis, he may well be the one for the job. Hope my reply is not too long but I ahve been bearing the daily load alone for far too long Bat-Sheva
  10. We had a seasonal Influenza A and B wave in the spring of 2005 and both girls, then 15 and 17 were clearly ill. When the influenza was gone and Sharon went back to normal life, Sandra was weak and badly coughing dry caught. The then school GM and my close friend, Marjaana saw her several times and recommended bed rest. Even when she did return to school the cough persisted. Then after a few more weeks the whole "show" started. Never had anything of the kind or anything special but for persistent ear infections at 1 year. It came very suddenly and no, no history what so ever. Marjaana tested her very thoroughly and we checked the social aspects and psychological ones. The girl was absolutely OK. The neurologists who saw her decided this was a late age abrupt Tourette's, no treatment, tests by neuropsychologist and psychiatry were scheduled in 6 months and in fact never took place because by the (very late) time they invited us, she was totally well (see later stage) which Marjaana and I could not take less seriously. I took her to a leading pediatric neurology who told me she had abrupt Aspberger (at 15.5 years old!!!) so I thanked her too and called my old friend in Israel, a leading immuno-neurologist and asked him to do some thinking and not offer me what he specialized in and then took her over to see him (he has met her many a time both in Israel and Finland and on line as we keep in touch regularly). He did a good deal of thinking and then told me about his experience with PANDAS and asked me all about Strep and what not and then instructed Marjaana in Finland what tests to run, and she did. Sandra tested positive for Influenza A and Mycoplasma Pneomonia. The next step was to treat it and she got appropriate antibiotics for ca a week, which got most of the symptoms, including the cough vanish and a few weeks later she got 60 mg Prednisone for a week, after which she was perfectly her normal active self for a whole year, until it all came back following an upper respiratory tract infection. My initial message from October details some more of the Saga. Hopes this answers in full - Absolutely abrupt, no earlier signs what so ever, actual pneumonia and positive blood work, which ahs remained high ever since but also fluctuates greatly within the high end of the IgG scale (50-200% changes). Bat-Sheva
  11. Thank you in advance! I need e-mail addresses for those doctors. Preferably for both lists. I think that as Mycoplasma P as a cause is a far more rare one compared to Strep, I should most probably run a mail shot to all, with the hope that they have something to tell us about using antibiotics for this purpose. I will also need any connection taht can be activated, that is, if sb on this forum is on such terms with an experienced doctor that one could bring this information to his or her attention and even get them to write to me and tell what they think they could do to help the doctors here get this done successfully. Also, if anybody knows any other forum that may be of use for the same cal for information. Now that I got the MP antibody statistics (high and strongly fluctuating) I have a GP ready to write prescriptions and do follow up tests but he would need a great deal of support. He, as well as my friend and our former school GP, are convinced my way of thinking is right and tha pasth ahs to be checked, instead of leaving her to deteriorate or stuff her with psychiatric medications (we tried and it simple brought her to the brink of psychosis, which vanished once we weaned her off them). The Turkish psychiatrists as well as Muller (a psychiatrist) used plasmapheresis, not antibiotics. Sandra may well be the first PM induced PANDAS-PITANDS that will try long term antibiotics and possibly steroid pulse therapy before going into other methods, or maybe we get it fixed this way... if it works for Strep, why not for MP? (in 2005 she got a normal 1-2 weeks MP antibiotics which fixed most of the problem and a little later a 1 week Prednison which fixed the rest. for one year! until it all came back, always following some respiratory or ear infection). Regarding plasmapheresis, I will not be able to get a doctor to do it without the background information. The cases mentioned were in Turkey, not Israel and I am also familiar with the work of Prof Muller from Germany, who cared to send me his articles after I called, but if I cannot get my doctors ehre to contact those doctors who have actual experience, there is no way we will get anything done. I decided long ago I was not going to take any doctors at face value and plunged into studying the subject. The problem is that I am not an acting MD (I do work in the field so I can read rather heavy material) and even if I were, I am her mother... and far too many doctors here have this idea that only doctors can understand and that they know all (medical research shows this being exactly the leading reason for mistakes in diagnosis and treatment...) and refuse to think outside the box. I believe that if I were to bring them the contact details and the cconsent to cooperate by the experienced doctor, I may be able to Save Sandra. I have done it twice along the way and I have no intentions of letting her young life go down the drain, and my own, and that of the rest of the family with it. Bat-Sheva
  12. Thanks for the good ideas. Prof Trifiletti is certainly "on my To Contact list". Regarding Susan Swedo, I had very disappointing experience when the story started and my friend, the Israeli immuno-neurologist finally got he diagnosis right. When the condition returned the next year I went on a round of whomever I manage to locate, who published on the subject. Prof Trifiletti's co-author from Italy, Pavone was most kind and supportive, but the team of Susan Swedo gave me a very cold shoulder. She did not reply herself but some social worker from her team told me they were simply not interested in the case because Sandra was 15 and did not have Strep. I read everything she published and she did at the time included PITANDS in the research subject. When I wrote they were not interested at all in anything but Strep and small kids. In fact, it seemed they were only interested in their own research work, not in suffering patients. If I am not mistaken, Beth, Sammy´s mother had rather similar experience with the Swedo team. Dr K was most willing to help but considered her high age and duration of symptoms a problem. He was of the opinion she might not benefit from IVIG. In fact she did benefit, until there was a mess with payment obligation between 2 hospitals (the Finnish system is very different from the US one) and one the maintenance treatments got delayed by months, a respiratory infection re-triggered the condition and the treating doctor got tired. I tried to get him information on cases and contact details of experienced professionals (no one in Finland seems to know anything about this condition or dare treating it but for our former school GP, who acted upon the instructions of my friend, who had the experience of a single case. We did consult some leading immunoneurology figures, whose opinion was that she would need rather aggressive treatments and we had no one here to get in touch with them and really figure out what was the basis for these ideas in terms of experience and results. Our doctor at the time, the leading neurologist of Metropolitan Helsinki would not bother to get in touch with them although they indicated they would rather give him the necessary information and could not understand why the mother was contacting them alone. No one ever brought up the idea of long term antibiotics before I read about the Sammy case and I would very much like to explore this lane as well as other non-invasive and less aggressive paths before we even reconsider plasma pheresis, Rituximab or the like. Beth sent me the most updated list of Pro-PANDAS medical professional she has compiled but most of the names do not have an e-mail address to match and I find it real hard lo locate up-to-date ones. Hope to get responses from both patients-parents and doctors on the discussion board... Bat-Sheva
  13. I am desperately looking for any information on other cases in which the underlying cause for the PANDAS symptoms are Mycoplasma pneumoniae and not Strep. Our Sandra is clearly such a case (5 years). Since the onset in 2005 her MP IgG are positive, elevated up to 6 times compared to the base value, and fluctuate, and so are her leucosyte values. I told about her case on http://www.latitudes.org/forums/index.php?...d&pid=41310 After getting hold of the Saving Sammy book and getting doctors to read it, we are finally getting somewhere with doctors accepting the idea of trying long term suitable antibiotics and/or other treatments, starting with the less invasive and harmful ones. I am now looking for information on similar cases treated, by whom and with what degree of success. If any of the doctors who treated such patients is reading this message. Would love to have you assist the Finnish doctors on the case. Please get in touch (batsheva.myllys(at)gmail.com). I believe that Sandra can be saved and still have a normal future. She will be 20 next month, a quarter of which has been made real ###### by PANDAS-PITANDS. Bat-Sheva Myllys Finland
  14. Did you have the child tested for Mycoplasma Pneomonia? Our almost 20 years old case started almost 5 years ago. Her ASO has always been negative BUT ca a month before this sad story started back in spring 2005 she had Influensza A and Mycoplasma Pnemonia - both tested positive. We benefitted from antibiotics and Prednisone back in 2005 and had her well for a year, but subsequent upper resp. infections retriggered the condition. Long course of prednisone did not help, IVIG did good but the doctor got cold feet after the maintenance schedule was messed up by the paying body and ever since we were left to suffer. Psyco meds did only harm. Her Mycop.P IgG titres are positive, high and fluctuating and we are working hard to get the medical establishment to try long term antibiotics and consider other lines of immunological treatment in case that will not suffice. Hope this helps, Bat-Sheva Finland
  15. Hello again. Heart warming to read your reactions, esp. as I have no one really on the Finnish side to share with in the same sense. I know Dr K rather well and had corresponded with him and even discussed once on the phone at some point, he was interested and helpful up to the IVIG point, but after its later failure he he got skeptic about her chances to recover. Have tried contacting him later on but got no reply. Prof Muller of Germany, who treated 4 cases with plasmapheresis replied and sent copies of his articles and Dr PAvone was kind and interested. I was hoping to get to Prof Trifiletti (they published together). I still do... Problem is we can no longer travel abroad for treatment. No insurance coverage (it is valid only until she is 20 and they refused to pay for the IVIG on grounds that it was "experimental", so we had to fight the public system to get it done. Long story.) and no other way to finance with the effect of the recession and the loss of income I face due to the need to intensively take care of her for the past 5 years. Well, I am sure the econoly will reover and hope Sandra will do too. I would love to get the particulars of Dr Latimer and the most recent ones of Prof Trifiletti, and contact. Thins is, I tried to get to Prof Abramsky in Israel, who is a globally prominent immunoneurologist and our diagnosing Dr firend's close friend and colleague. He did review Sandra's data and discussed with Dr Milo, and eevn wrote to me and had some ideas regarding immunomodultory treatment. The problem was that no Finnish MD with the possibility to carry those out dared, e.g. the leading neurologist in Helsinki who did administer the IVIG said he was not going to do plasmapheresis or prescribe RITUXIMAB or long term steroids because he did not have enough data, but on the other hand, he was not going to contact prof Abramsky to consult him on the reasons for these recomendations (e.g. case histories) either, and so we got stuck. I even tried Susan Swedo, but her stuff did not warm to us. We got an answer saying that Sandra was too old and that they were only interested in small kids who had strep. I.e. they were not interested in some patient wellbeing but in their research alone. My hope now is to get these 2 new doctors (the rehab and the psychiatrist) we managed to get involved interested in helping get more info on the immunotherapy aspect and do what will be considered safe enough to try, instead of classifying her "a lost case" and trying to stick onto her some more psychiatric diagnosis and neuroleptic medication. I think that there is no firm basis to say to the claim that relatively safe immunotherapies should not be tried neither because of her age nor because of the time this has been going on, just as much as we have not yet seen enough scientific literature to support the approach, besides the Turkish cases, of which I read (do not think that any other MD involved had but for the GP, who has been supporting me in this at her free time) and Dr Muller's few cases. Thank you in advance for all your help and support! Bat-Sheva (Sandra and the rest of the family)
  16. Hello all, A newcommer to the list (all the way from Finland), I am hungry for information. Are there patients/parents of patients who developed PANDAS or its variants in late teens or as adults? How were they treated and with what long term results. Some background info. Sandra, now almost 20 developed it after Influensa A and Mycoplasma Pneomonaea at 15, her main symptoms being great difficulty to concentrate, involuntary movements (of chorea-athetosis nature), vocal tics, irritability, slight hair pulling). We had to struggle through the usual ignorance, lack of interest and politics and wrong diagnoses, including TS, sudden Aspberger 15, a long list and wide spectrum of mental ilnesses, what not. No other case is known in Finland. She was finally diagnozed by an immuno-neurologist, an old and close childhood friend, working in Israel and treated in Finland by the only one who took the issue seriously, at the time the school GP, first with Zeclar and then with Prednisone for a week. It did the trick and she was OK for a yera, until a relapse after respiratory infection. At this point neitehr short nor long course of Prednisone helped, but a later (took that long to fight to get it) IVIG was effective. For inter hospital "administrative mismanagement", maintenance was not continued as prescribed and after 4 good months she had a repalse. After pussint huge pressure on the system, they started a 2nd IVIG series and steroid pulse therapy but these were discontinued because of administrative issues. Several versions of symptomatic medication resulted in a disaster and had to be stopped before we all were to lose our mind. After 5 years with the condition, 4 of which of pure suffering, mostly for Sandra but also for the rest of the family, we ended up in the hands of the rehabilitation dept and psychiatry dept in the hospital (no neurologist is interested any longer) and I am desperate to supply them with case histories of late teen and adult cases which were cured or significantly improved following immuno-medical treatment, as there is some chance they may still listen! Else, an intelligent and tallented young woman could get shelved as an invalid on a minimal subsistance pension, which is the easiest thing for the system to do as it is not meant to deal with rare and demanding cases. The condition not being officially listed, the private insurance company refuses to finance anything related to it. Seeing what immuno-medical treatment did in the past, I am fully convinced that there is no reason to give up hope and give in to the system and am determined to find examples of effective therapy, which did succeed. I need information on on medical professionals who have managed to treat and maintain the results and on patients who recovered, if only possible, . Bat-Sheva Myllys
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